Gee Mike...now you've got me totally freaked out and I don't know what I should do because at this point I don't want to go to Mayo for the CRPS, I want to go for all this other stuff that I am not yet convinced IS CRPS (though I don't know how exactly to seperate them efficiently since the new stuff occurred after a block that was being done to treat the CRPS). I really want to know if there is something ELSE causing these other problems. Am I wrong with that? Maybe it's just my intense desire that these new things NOT be CRPS that is clouding my judgement...I want them to be just about ANYTHING else. A lot of it seems consistent with the CRPS but it is different in a lot of ways from my ankle. Though it is similar to how the ankle was just a couple months after the injury with the exception that it is so wide spread where as the ankle pain was more centralized. I don't know...now I feel like I am making a big mistake with everything. Is Mayo really that bad a place to go to see if these new symptoms since the block are something else? If they are something else then would Mayo be the right place to go to get it figured out (ie is CRPS/chronic pain the only thing they don't deal with well)?

Dear Catra -

I apologize for causing you anguish. I am just saying that if you "want" it to be anything other than CRPS, and thereby got yourself off from the most effective treatment now available for CRPS - ketamine infusions under the current protocols - you will get your wish in going to the Mayo Clinic.

And as always, be careful what you wish for.

I would therefor plead for you to be evaluated be a real CRPS specialist - not just a neurologist or garden variety pain management doctor - first. And if you get a Dx of CRPS, begin treatment!

Now, recently, you have referred to "other symptoms" that you didn't believe were related to CRPS, including some mention of abnormal blood work. Could you please be more specific as to what those symptoms have been? I ask for two reasons, first because physical pain that is different from your initial pain need not be inconsistent with CRPS. (Sorry.) Secondly, it's true that CPRS won't explain a case of malaria, but you would be shocked to know how many things it can be tied to, either through autonomic dysfunction or just development of what is, in the first couple of years or so, an autoimmune disorder even if not universally recognized as such.

Case in point, when I last went through the Mayo Clinic, following a heart attack, I begged a friend of mine who was coordinating my appointments to be seen by a specialist in neuro-autoimmunity, but that group - which primarily handles MS - wouldn't see me, CRPS wasn't a neuro-autoimmune condition. A few months latter, this came out, Autoimmunity in Complex-Regional Pain Syndrome, Blaes F, Tschernatsch M, Braeu ME, et al, Ann NY Acad Sci. 2007;1107:168-173, FULL TEXT @ http://www.rsds.org/2/library/articl...20Sci_2007.pdf:

Abstract
Complex regional pain syndrome (CRPS) is an etiologically unclear syndrome with the main symptoms being pain, trophic and autonomic disturbances, and functional impairment that develops after limb trauma or operation and is located at the distal site of the affected limb. Because autoantibodies against nervous system structures have been described in these patients, an autoimmune etiology of CRPS is discussed. These autoantibodies bind to the surface of peripheral autonomic neurons. Using a competitive binding assay, it can be shown that at least some of the CRPS sera bind to the same neuronal epitope. Autoimmune etiology of CRPS is a new pathophysiological concept and may have severe impact on the treatment of this often chronic disease.

PMID: 17804544 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/17804544

But don't get me wrong, if someone suspects a glioblastoma or breast cancer, don't focus on the CRPS. But if all you have are some neurological findings that don't fit the bill for classic CRPS, while others do, see the CRPS specialist.

But please, relax, stay in the present, and take it one day/moment at a time.

Mike

Thanks again Mike for the info. I'm not 100% sure what the abnormalities were in the bloodowork this time (in the past is has been a high sed rate and low glucose)...but I see the doc on Saturday morning to go over those results.

As for my 'new' symptoms that I currently have they are as follows in no particular order (I started keeping a list):

-Extreme tenderness/burning pain in back, neck, shoulders, arms, hands, sides, stomach, upper chest, thighs, and top of head.
-Very sensitive to touch in tender areas.
-Puffyness/redness in all tender areas.
-Bloated/swollen stomach (happened in like 3 days without medication change after LSB)
-Uncoordination/trouble walking
-Trouble judging speed/direction
-Poor balance
-Full Body Spasms
-Shaking/Teeth Chattering
-Chest Pains
-High Heart Rate at Rest (between 110-160)
-Double vision/Blurry vision
-Dizziness/Nausea
-Spinning/Bouncing/falling sensation (vertigo?)
-Vomitting (3-7 times a day)
-Intense Headache
-Deep pain in spine from low back up through neck
-Hallucinations (at least once a day, sometimes more)
-Hair Loss (handful or so a day in shower)
-Fevers up and down
-Night Sweats
-Difficulty sleeping
-Violent Nightmares
-Ringing in ears
-Eyes burn
-Weakness
-Fatigue
-Trouble Concentrating
-Hands go numb easily
-Red areas sometimes itch like crazy

And...I don't know whether this is related or not but I have had cold symptoms for the last few months (stuffy nose, sneezing, etc) and I just can't seem to shake it. Obviously this doesn't include the CRPS pain in my left ankle which is also through the roof. Goodness...I really am just breaking down physically at this point. After the block on Jan 10th I started to get the pain in my spine...but everything else started after the block on Jan 31st...beginning with extreme tenderness/burning pain in my back and neck and high heart rate. Then it all progressed from there.

So...what do you think? Most likely CRPS related or possibly something else. Also keep in mind that I had a MRSA infection when I had the first block done and a UTI when I went to the ER a couple days after the second block. I'm still thinking there is quite possibly an active infection that entered into my bloodstream or soft tissue and that could explain a lot of things. Not a serious case or anything...but even a mild case of sepsis could cause a lot of these problems, even hypoglycemia which would explain most of the other symptoms that infection wouldn't (including the low glucose levels in the blood work). But while all the docs have said an infection is possible...none of them have done anything about it. And MRSA is such a hard one to knock out completely (this is my 2nd or 3rd time with it). I don't know...but if you have any thoughts and comments I would appreciate them. I always like to have new things to consider and to take in to the doctors.

Happy Good Friday
 

Dear Catra -

I'm sorry for not having focused on the Dx of MRSA earlier, if I was aware if it. I am forced to join you in your surmise that with or without the LSBs, the MRSA somehow managed to work it’s way into the spinal column and from there has done you no favors. If I’m correct – and I pray that I’m not – you have an emergent situation to deal with. Checking out the Wiki article on Methicillin-resistant Staphylococcus aureus http://en.wikipedia.org/wiki/MRSA was an eye opener. I would like to presume that you have been under the continuous care of an infectious disease specialist, but know that's not the case.

You spoke at one point of having had MRSA in the past tense. Was that based on subsequent cultures that came back negative? But then in the end you speak of it as a recurrent infection. You have given reason that this may still be around. In fact, as set forth near the end (as fait would have it) of my line-by-line response to your checklist, I am concerned about the outside possibility of bacterial meningitis. I would be more concerned if you reported a stiff neck, but a severe headache and pain in you spine, along with a simmering fever of how many months, would have me concerned and DAILY HALLUCINATIONS puts me over the top.

Furthermore, infective endocarditis http://en.wikipedia.org/wiki/Infective_endocarditis can be a side effect of unattended MRSA. And night sweats fit right in there. (According to the Wiki article, MRSA would also explain the UTI.) The great crime appears to be that you were not referred to an infectious disease specialist six months ago.

At least it seems that we now understand why you've been maintained on 3,000 mg of Tylenol a day. By the way, how did the liver functions come out in the blood work?

I guess where I’m coming down is here: if I were you, I would consider knocking off the Tylenol immediately, just to see what happens to the fever - your call - and contact your doctor and ask him/her which ER you should go to be worked up for bacterial meningitis TODAY. And while you're at it, throw in the infective endocarditis where you have been dealing with night sweats on top of the fever and chest pain; at least according to the Wikipedia article, an echocardiogram can often be of assistance in making a positive diagnosis, although it wouldn't be relied upon alone to rule out the presence of the disease.

Describe the headache, spinal pain and hallucinations in explicit detail and mention the fact that you've been running a low-grade fever for months, checked only by the Tylenol. Leave an emergency message for him/her, describing your symptoms and if you don’t hear back within a hour or two, have a friend take you to the ER of your choice, Good Friday or not. Get there before 1:00 pm in any event, having eaten for your comfort, so you are not showing up over the weekend and have a better chance of being seen by a specialist in the ER, if necessary. [You may want to take the holiday into account in picking your hospital, though.]

This is nothing to fool around with. Please look at this Letter to the Editor of Clinical Infectious Disorders, Successful Treatment of Methicillin-Resistant Staphylococcus aureus Meningitis with Daptomycin, Dong Heun Lee, Brandon Palermo, and Mashiul Chowdhur, Clin Infect Dis. 2008 Aug 15;47(4):588-90. FREE FULL TEXT @ http://cid.oxfordjournals.org/conten....full.pdf+html

Now, if you don’t have to be hospitalized immediately, and everything on your list can't be handled ASAP in Chicago (as in months ago) and you can be seen by an infectious disease specialist as your primary point of contact at either the Mayo or Cleveland Clinic, I would say go with grace. From there you could expect a comprehensive workups in gastroenterology and cardiology, probably before they focus your physical pain, except to the extent that sympathetic dysfunction may be at the root of a number of your other symptoms, particularly the gastric ones.

Now, going through your list of symptoms, I will, only at your request, hazard the guess of non-medically trained and defunct business bankruptcy attorney:


-Extreme tenderness/burning pain in back, neck, shoulders, arms, hands, sides, stomach, upper chest, thighs, and top of head. Could easily be CRPS.

-Very sensitive to touch in tender areas. Ditto.

-Puffyness/redness in all tender areas. Ditto. It's called edema.

-Bloated/swollen stomach (happened in like 3 days without medication change after LSB) Was this accompanied by severe constipation? It could be an Ileus: a disruption of the normal propulsive ability of the GI tract. More likely, however, is that is a known symptom of Gastroparesis http://en.wikipedia.org/wiki/Gastroparesis Please look at the discussion under vomiting, below.

-Uncoordination/trouble walking Ask some of our forum members who need guide dogs to maintain their sympathetically compromised balance.

-Trouble judging speed/direction Not Sure. My son tells me I can't judge the direction of sound anymore, which may be due to the "thalamocortical dysrhythmia" of CRPS. See, generally, Jones EG Thalamocortical dysrhythmia and chronic pain, Pain 2010 Jul;150(1):4-5, Epub 2010 Apr 14, FULL TEXT @ http://www.rsds.org/2/library/articl..._Pain_2010.pdf

-Poor balance See above.

-Full Body Spasms Classic CRPS. And the funny thing is, that's about the most easily controlled item on the list.

-Shaking/Teeth Chattering ?

-Chest Pains Could be related to CRPS via a couple of mechanisms, or infective endocarditis secondary to MRSA or none of the above.

-High Heart Rate at Rest (between 110-160) No comment. But please check out Heart-brain interactions in cardiac arrhythmias: role of the autonomic nervous system, Zipes DP, Cleve Clin J Med. 2008 Mar;75 Suppl 2:S94-6, FULL TEXT @ http://www.ccjm.org/content/75/Suppl_2/S94.long

-Double vision/Blurry vision Although there have been a number of anecdotal reports of this in the CRPS forum, my 2-hour PubMed searches under topics such as "diplopia [double vision] autonomic sympathetic etc. came up dry.

-Dizziness/Nausea See above re balance as a function of autonomic dysfunction. For nausea, see vomiting, below.

-Spinning/Bouncing/falling sensation (vertigo?) From a post by one of our respected members, about her daughter: Neurally mediated hypotension...which is low blood pressure with syncope, same thing, It is a part of RSD, it is a part of the autonomic nervous system. . . . . VasoVagal is the same as Neurally mediated hypotension...and Orthostatic hypotension... when my daughter was in the Cleveland Clinic childrens pain program, while talking with the parents of the other children there with RSD, most of the children also suffered from Vasovagal.

-Vomiting (3-7 times a day) Okay, as defined by Wikipedia:

Gastroparesis, also called delayed gastric emptying, is a medical condition consisting of a paresis (partial paralysis) of the stomach, resulting in food remaining in the stomach for a longer period of time than normal. Normally, the stomach contracts to move food down into the small intestine for digestion. The vagus nerve controls these contractions. Gastroparesis may occur when the vagus nerve is damaged and the muscles of the stomach and intestines do not work normally. Food then moves slowly or stops moving through the digestive tract.

* * *

Chronic gastroparesis is frequently due to autonomic neuropathy. This may occur in people with type 1 diabetes or type 2 diabetes. The vagus nerve becomes damaged by years of high blood glucose, resulting in gastroparesis. . . .

While the Wiki discussion of causation is quite general, if you run a PubMed search under “gastroparesis sympathetic,” you’ll get – as of tonight – 19 recent articles, many of which are freely down-loadable. As much as it breaks my heart to say it, there appears to be a strong link between sympathetic dysfunction (remember, the used to be known as Reflex Sympathetic Dystrophy). The good news, such as it is, is that the Mayo Clinic has the top Gastroenterology Dept. in the US.

-Intense Headache My guess this has more to do with MRSA than anything else. But it definitely needs attending to ASAP, not in 6 -8 weeks but now: I am concerned about the possibility of bacterial meningitis: where MRSE can enter the protective membranes covering the brain and spinal cord (known collectively as the meninges) with or without the assistance of LSBs. Successful Treatment of Methicillin-Resistant Staphylococcus aureus Meningitis with Daptomycin, Dong Heun Lee, Brandon Palermo, and Mashiul Chowdhur, Clin Infect Dis. 2008 Aug 15;47(4):588-90. FREE FULL TEXT @ http://cid.oxfordjournals.org/conten....full.pdf+html

-Deep pain in spine from low back up through neck See above.

-Hair Loss (handful or so a day in shower) I've heard that stress alone can do that. Stress, why should you feel stressed?

-Fevers up and down MRSA and its progeny

-Night Sweats Infective endocarditis secondary to MRSA

-Difficulty sleeping Terror?

-Violent Nightmares Not a psychiatrist. But loss of electrolytes from the flu does a number on my dreams, i can only imagine what the vomiting must do for yours.

-Ringing in ears Tinnitus, like CRPS is a thalamocortical dysrhythmia. But then, so too is depression.

-Eyes burn Dehydration from vomiting?

-Weakness Not sure; in light of a normal EMG this could have a bit of a functional quality.

-Fatigue Infective endocarditis for one, possible depression for another.

-Trouble Concentrating Aka loss of executive functioning. CRPS

-Hands go numb easily No clue.

-Red areas sometimes itch like crazy Sounds more like a dermatitis.

In sending this, I have never been this torn in all my years of posting. But they’ve done you so wrong, you are now in an untenable situation.

I’m sending you contact information by PM. Hang in there kid.

Mike

I think you got a wealth of info from Mike.

Just wanted to mention that I know my PM won't do ANY block if you have an infection or are on an antibiotic. I am surprised yours would do a block when you had MRSA. On Wed. I overheard the lady at the desk doing reminder calls and she got someone who had an infected spider bite. They put them off at LEAST 2 weeks until they had finished the antibiotic AND had a week after to make sure it was gone. I think Mike has some great ideas of what to look into. Follow his advice.

Also, for the hair falling out...if you are not getting enough nutrition/protein (which with the amt of vomiting I would guess you are not) it would make your hair fall out. So will the stress.

Hang in there.:hug:

I hope you feel better.

Well...my liver functions tested okay...so I guess that's something positive...

Just did a quick read through and now I'm going to print that off and read through it again more closely, and definitely take it with me Saturday (or at least a list of the things you mention).

I have been to the ER a couple of times but every time I go they flip out about the heart rate and ignore everything else I tell them. I have even asked about menengitis, the MRSA infection, and a few other things. Basically I get told that if it were menengitis I would be dead already OR it would have worked its way out of my system by now (no testing has been done for this period). They found the UTI when I went in the first time (a few days after the second block) and just said that was what was causing all my pain in my back/neck etc. I don't know...I hate going to the ER if they are just going to ignore me and say I need to see my regular doc. They usually give me something to bring down my HR and then send me on my way.

The MRSA is strange to me because I've had the cultures done when I have a painful lump and they say it's MRSA. Then the docs put me on a week or so worth of antibiotics and then I never hear from the docs again. The painful lump/rash goes away and that's that. Then a few months later...I get it again. So I guess there's never been a test to show that it's gone away and it's more likely (I think) that it just goes into a bit of remission with the antibiotics but never really gets knocked out of the system. I have heard this happens to a lot of people who get MRSA...that it keeps coming back.

I guess what I find frustrating (or one of the things that I find frustrating) is that I can sort of map out almost all of my symptoms on a piece of paper and come up with a perfectly logical explanation of them (several explanations actually depending on the CRPS)...but apparently none of the doctors can? I guess I live with this daily so it's sort of all consuming for me, but when I have asked doctors about a lot of these things specifically I get the brush off and no real reasoning as to why other than the general, "I don't think you have that." Okay...why? Not saying I want to HAVE anything...but there's obviously SOMETHING going on and if you don't have a better idea then why not at least test for it.

The good news is that I think my new doctor will work with me on this when I bring in these ideas. I mean, if nothing else, it can't hurt to keep looking for answers before I get into Mayo, right? Especially if it's an infection. I do not want to die from an infection in my system because everyone was so focused on my walking problems. Well...I don't want to die from anything really...regardless of the reason.

Okay...gonna write it all down and plan out what I'm going to go over with the doctor tomorrow. And...btw...the opinions of a "non-medically trained and defunct business bankruptcy attorney" have been very helpful and are greatly appreciated. Thanks.

It sure sounds like a lot is going on and I just want you to know I am keeping you in my thoughts. I wish you luck tomorrow @ the new doctors. Also at least in NY, the hospital have a "patients bill of rights" and one of those rights is, they cannot make you leave the hospital if you feel you are not being properly treated and/or treated fairly. Not sure if they have that where you are. Doctors do not like us "looking into our own medical problems" because that means they have to step up their game and not just brush us off.

Stay on point and insist on more testing until you are satisfied. If you do not advocate for yourself, nobody will. :)

As far as the block being done while there was an infection...this is a sore point with me because I think it happened as a result of incompetance on the part of doctors and VERY incompetent medical staff. I went in for my yearly physical on Jan 6th and told the doctor that I thought I had a MRSA infection. Doc looked at it and said it was probably just an ingrown hair but if I really wanted him to, he would take a culture and send it out. So took the culture but didn't put me on antibiotics or anything because he really didn't believe it was an infection. This was on a Thursday.

Then on Monday January 10th I had my LSB. When I got there I informed the nurse that I thought I might have an infection. She asked if I was on antibiotics and I said no. She said she would talk to the doctor but they went ahead and did the procedure anyway. I'm guessing because if I had an infection, they thought my doctor would have put me on antibiotics. That's assuming the nurse even spoke to the doctor about it because I witnessed a lot of stupidity on the part of the nurses in that office and the doctor regularly chewed them out for being idiots in my presence (mostly about things that had nothing to do with me...the exception being when one of the nurses manually took my pulse after the machine said my heart rate was 150 and she complained that I was moving too much when the problem was really that she was using her thumb to try to take my pulse and then she told the doctor that my pulse was 40...if looks could kill that nurse would have dropped dead then and there with the look the doctor gave her).

On Monday afternoon I got a call from my primary care doctor saying that it WAS a MRSA infection and they put me on antibiotics. So I really can't say who is to blame for the procedure being done when I had an active infection. The doctors, the nurses, or myself. I knew it, I told them, but I'm just the patient...what do I know? Well...apparently I know the difference between an ingrown hair and a MRSA infection.

Also concerning, I think, is that when I went in on Monday Jan 31st I told the doctor this time about the deep pain in my spine and the terrible headache that I had had since the first block. I also told him I had an infection when the first block was done. His response was that it was strange for me to have had pain in my back get worse after the first day after the procedure. He looked at my back, said it doesn't look like it's infected but we should check that out, and then he went ahead and did a second block and gave me a script to get bloodwork done to check for an infection. And then my whole world went to hell...either from an infection, menengitis, spread of CRPS, some other unknown, or a combination of things.

And the whole time I think I must be at the very least partially to blame because I should have changed primary doctors years ago but was used to seeing his PAC (who is very good). I shouldn't have let the new PM convinve me that LSBs would work this time to relieve the pain if they were done in a series as opposed to just one and done like I had in January 2010. I shouldn't have been such a push over and been so trusting when my pain only got worse instead of better after I first saw the pain doc. I know there's no point in dwelling on the past, and if having faith in doctors and their opinions is a flaw then it's one that I'm sure a lot of people have, but I'm trying to learn from my mistakes and correct the ones I can. I won't ever see either the primary care or pain doctor ever again. I'm trying to be much more assertive in my appointments with my doctors. And...I'm trying to listen to my gut more rather than just being dragged down a path by the doctors when I don't feel it's right for me.

Goodness...I am long winded. I swear...I could write a 1000 page book just on the stuff that has happened to me since December...